Archive for December, 2013

I imagine I hate it the way some people hate cancer or auto-immune disorders or rare genetic conditions. I’m sure I hate those things too, but Alzheimer’s keeps showing up and reminding me of its power to reduce, dislodge and set adrift. In a time of life when people should be enjoying their memories, taking stock of time passed and things accomplished, this disease takes all of that away. It confuses, upsets, deconstructs. And it wreaks further havoc on the afflicted’s family, as they do their best to cope with the situation while watching the person they love fade away before their very eyes.

The pervasiveness scares me the most. My family is coping for the second time in four years. Almost every friend I have has a grandmother, grandfather or other relative who is affected. All of their families have stepped in to be caregivers to their loved ones for as long as they can. It is stressful, all-consuming, life-altering. It is the only option.

I’ve written articles (many years ago now) about the research being done to understand Alzheimer’s and why it attacks the human brain. Some of this vital research is being done in Santa Barbara, at UCSB. I have confidence that these scientists will figure out a way to cure and treat it effectively, but I wish the science was there already. The medicine available now seems like too little, too late.

That first day that someone you have known your whole life doesn’t know you is awful. You can prepare yourself, and guess that it will probably come soon, but when it happens it still rips out your heart. There isn’t anything anyone can say to make it better. You can’t be angry at them for not knowing you – it isn’t their fault. Their confusion, combined with your shock, becomes that moment when you search for the right identifiers to explain why they are supposed to know you.

“I’m your granddaughter.”

“I’m your daughter.”

“I’m your son.”

It’s so hard to know what you are supposed to say next. If I could redo that moment, I think I’d say: “I love you.”